Understanding a G tube

I'm not a medical professional. I'm just a mom who will do whatever it takes to keep my children safe and healthy. I want to start by saying always follow your child's care team's instructions over anything you read online - this is just what I've learned. I've learned a lot about medical equipment this year. If you're following along with Tulla, or just curious for yourself, here's some FAQ-style information.

What is a G-tube?

A gastrostomy tube (G-tube for short) is a small tube placed through a small incision directly into the stomach. It has a balloon or bumper on the end which holds it in place and keeps it from falling out. The other end of the tube has a capped port (sometimes referred to as a button) where you connect the feeding tubing.

Who needs feeding tubes? Feeding tubes are placed when it is difficult or unsafe for someone to eat orally. Children who struggle with sucking, chewing, or swallowing may require a feeding tube. Being unable to take enough food by mouth or having extreme reflux/breathing problems are other common reasons to have a tube. It can be capped off when not in use, and can be used to replace some or all of the food intake.

Can you eat orally if you have a G-tube?

Having a G-tube doesn't mean you can't eat by mouth. However, this is something your doctor will discuss with you based on what's safe for your child.

Is there more than one kind of feeding tube?

Yes, there are several types of feeding tubes. I'm going to stick with talking about the ones I have personal experience with.

What's the difference between a G-tube and an NG-tube?

A G-tube is inserted directly into the abdomen, typically under sedation through a laparoscopic surgery. A nasogastric (NG) tube can be placed while a person is awake. It is a small flexible tube that goes through one nostril and down the throat to the stomach. An NG-tube is typically a short-term solution, not placed for more than 6 months in many cases (that's not to say there aren't exceptions where they could stay longer). A G-tube is a long-term tool. Both can be used with a bag and pump or syringe for feeding, and both typically need to be changed every 4-6 weeks. A G-tube can usually be changed at home, but an NG typically has to be placed by a trained clinician.

Are G-tubes permanent?

A G-tube can be used as long as necessary. If there is a time when it isn't needed any longer, it can be removed and will heal up quickly, leaving only a tiny scar in most cases.

What does feeding with a tube look like?

There are different methods for administering feeds, but the common one (and what I know) is feeding with a pump. The setup is a bag with a tube at the top, a pump below the bag with the tube attached by a plastic clip, and the child at the same level with, or slightly below, the pump. This lets gravity help the process. Some people use a special backpack, an IV pole, or a hook on the wall to hold the bag and/or pump. A shorter extension tube is connected to the food bag tube and clips onto the button. The food is then placed in the bag and is pushed through the pump at the rate that works for your child/the doctor recommends.

How often do you need to use the feeding tube?

This varies based on each child's needs. Children with feeding tubes work closely with a GI and a dietitian to create an individual feeding schedule. Some need continuous feeds for multiple hours each day. Others have a schedule. In Tulla's case, she eats every 3 hours during the day, and has one overnight feed.

Does the tube stay attached all the time?

The short answer is - it depends. Some children need continuous feeds, so the tube and extension are attached unless there's a pause to clean it out or change feeds.

If the feeds aren't continuous, the tube and feed bag come off between feeds. Whether or not you choose to remove the extension as well is more an individual choice. From parents I've talked with, most take the extension off, so there's less risk of it getting pulled on or snagged. It gives the kiddos a break. This helps keep the skin around the button from getting stretched out, but it can wear out the connection between the button and extension more quickly.

Some parents find that their children don't like the process of attaching and removing the extension, and taping it to the child's belly is simpler. (Note: it will gunk up faster if it stays attached, so cleaning it off daily becomes even more important.)

Is there special clothing for G-tube users?

Yes, there is adaptive clothing for G-tube users. They usually include easy access to the button with snaps, zippers, or velcro. However, whether or not you choose to use adaptive clothing is up to you. Some families find it extremely useful, while others think it's unnecessary. They either dress their child in separates (shirt and pants), run the extension down the pant legs, or choose sleepers for babies with snaps so the extension can go between them. It's a bit of trial and error to see what's easiest for you and your child.

Getting into the nitty gritty:

The next few questions are more directed towards parents who are working with a G-tube. If you aren't interested in the more technical medical side of things, you can skip to the end.

What's involved in placing a G-tube?

Each hospital has its own procedures, and it can vary by child, but here's a basic rundown based on what I experienced with my daughter. The child is placed under sedation. For Tulla, that started with a mask to put her to sleep initially, then an IV line was placed to administer antibiotics, longer-acting sedative medication, and hydration fluids. Then a small incision is made into the belly button where a camera is inserted to show the surgeon what they're doing. One more small incision is made in the skin and into the stomach, and that's where the G-tube is placed. They insert it, add a few stitches to hold the stomach wall to the skin and help with the healing, and that's the whole thing.

Do I have to stay home with a G-tube?

Nope! Feeding can happen anywhere. There are special backpacks (affiliate links help support our family at no extra cost to you) that hold the bag and pump, so you aren't limited in where you can go.

What is venting?

Burping through the G-tube, or venting, is when you allow the stomach to expel extra air or food. It can be done by clamping your extension (the tube that attaches to the button), attaching a large syringe to the other end, unclamping, and holding the syringe upright for one to two minutes.

The syringe can fill up with food/stomach juices (sorry, that's what they're called). After a few minutes, gravity should allow the contents of the syringe to flow back into the stomach. Unless your doctor says otherwise, make sure it all goes back in because it has important electrolytes, and any medications you may have administered.

Why is venting important?

Sometimes kiddos with G-tubes struggle to tolerate a feed. This could mean vomiting, gagging, crying or being crabby, or having a swollen belly. (If you ever question how your child is tolerating feeds, or have any concerns, call their care team. Trust your intuition and ask all the questions!) These situations aren't fun for the parent or the child. Venting can make them more comfortable so that it's more enjoyable for everyone.

Why is the skin around the G-tube bumpy and red?

Don't panic. This red bumpy skin is just the tissue trying to heal. It's called granulation, it's common, and it doesn't mean the skin is infected. It is something you need to talk to your doctor about because it may shift the tube and cause some leakage. They can prescribe a steroid cream or treat it at the hospital with silver nitrate.

Should the site be leaking?

It's common to have some discharge, a sticky, clear-ish substance. Do your best to keep the tube secure, clean, and dry. Your insurance should provide split gauze that you can secure around the button, or you can purchase reusable ones online like these (affiliate link). If the color is greenish or pus-like, if it smells, if it looks like their feed, or if you have any other concerns, call your doctor.

Conclusion

A G-tube is a medical device that helps those who are unable to take any/enough nourishment orally and can be used for as long as a child needs. It's fairly straightforward to use, but it can have complications. If you are caring for one and have any questions or concerns, please ask them. Your medical team should be happy to address any situation you bring to them.

I'm posting as I'm learning, so I hope you find something here helpful or informative. These are things I wanted to know as I was learning about G-tubes for the first time. Maybe it's information you want to know too. Thanks for reading!